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Friday, December 27, 2013

Another New Year...

Soon I will mark my SECOND year without the organ that threatened to ruin my life. Crazy to think it has been almost two years. I remember thinking the one year mark would be a huge celebration, and now it is almost two. I have not posted in a while, mostly because I have nothing profound to write and usually don’t feel the emotions I used to feel when I would write. They say the best time to write things down is when you are feeling those moments of extreme happiness or sadness. I guess most of my writing came from times of sadness and fear, and now I am plain Jane, and I am really happy being her! Perhaps I have lost my writing passion, hope not.

I would say recovery took an entire year looking back on it, and this year was the year to just live life. I can do whatever I want, go where ever I want, and be whoever I want to be because nothing is holding me back. Year one was still a year of recovery and I still needed to be very careful. I think I finally have "thinking like a pancreas" down, and just when I think I have diabetes dialed in, it usually throws some type of curve ball my way, but that is okay. I know that will be a lifelong ride, one that I gladly welcome in lieu of the alternative. Every once in a while I have flashbacks of the old way of life, where eating one egg all day seemed like I was doing really well with food, or when I would sleep for 2 to 3 days and wake up feeling like I could not get out of bed. In those moments, I remember why I need to write things down for people who are just beginning their journey. How helpful a blog of a person doing well would have been at that time!

Being grateful and happy was something I promised myself I would do every single day once I got better. For a while I couldn’t stand to even be friends with some of my old friends, who used to complain or talk about things that I felt had no importance. I really went through a stage where I felt that all that was important in life was health and life itself and it pained me to see people who took that for granted. Now, I am sure I have my moments when I don’t hold true to my own promise to myself (actually I KNOW I have moments) and I have loosened up. As time goes on, you forget those feelings, but you never forget to thank God and be grateful.

What’s New?

UMC in Tucson did shut down its islet cell transplant program, which made me so very upset. Not for myself, I am fine, but for those patients who had transplant dates, appointments, or the very worst, just had the surgery. I can’t imagine how alone they feel and how scary that must be. The UMC is turning previous patients away for follow up, and everyone is on their own, which is even a scary thought for a patient who is doing well, like myself. I know Dr. Grussner filed a lawsuit against the UMC for his job back, and I pray everything works out in his favor. He is an amazing, talented, and absolutely dedicated surgeon, and I cringe at the thought of that talent being wasted over silliness and politics. Now when I speak to patients I recommend they call Baylor, University of Minnesota or MUSC (Medical University of South Carolina), even though that makes me sad too! I had the best doctors around, and now others won’t get to experience that type of care, or Dr. Rilo's humor, can't decide which is worse.

As always, if you stumble across this in a Google search and you are like I was, praying for information and an answer that would help you, please email me! I try to write back to all of them right away and would love to tell you my story of success. Life is precious!

Thursday, October 24, 2013

This letter explains it all, but sadly the center at the UofA that saved my life is closing. We are currently working on getting a very loud and clear message across to the CEO of the hospital, Dr. Waldrum, that this decision is a poor one that will affect many lives. Patients that are one, two or even three months out NEED follow up care. At this time they are only allowing the program to stay open for 90 more days. Please help me in being loud! What can you do?Call and ask for the office of CEO Waldrum at (520)694-0111 Be vocal and positive on why this program needs to stay open! ORFax letters of support (example, mine below) to (520)6940170

Dr. Waldrum,

I am sure that as a hospital you receive many complaints. Health
is something that is serious, sensitive, and every case is less than uniform.
That seems to be the nature of most things, we hear the negative first, the
hardships, the misdeeds, the unfair of all the world. I am writing you today
with an opposite intention. I am writing you to rave about a specific program
that you have at the UMC that is such a world renowned asset to your hospital.
My job today is to explain why this is program needs to be funded, kept, and
valued by all of your staff members.

For three long years I battled hereditary pancreatitis, starting
at the age of 23. My pancreas was auto-digesting itself, which means the
enzymes used to digest food were digesting the organ itself, causing horrific
pain and scarring. I worked my way through a broken medical system, was labeled
as a drug seeker, was told I was too young to have pancreas issues, was
misdiagnosed with everything from gallstones to a virus. In reality,my 87 pound, 5’9” frame was dying, and my
pancreas was on its way to developing pancreatic cancer.

I found the ComprehensivePancreatitisCenter
at the UMC. I called that very day and was and led through the approval
process. My case was reviewed, I was accepted, and I began my journey through a
total pancreatectomy with an auto-islet cell transplant. Through my process, I
blogged, and with that blog I have reached 40,000 people, many who are
afflicted with the same disease and are hopeless.

I am active in support groups for my disease and in those groups
there are few centers that are so highly revered, your center being one of
them. Several centers have popped up, but it is common knowledge that if you
want a great outcome and world class surgeons, you need to go to the UMC. Dr.
Grussner and Dr. Rilo are those surgeons, and they have saved my life as well
as many of my now beloved friends lives.

When a center such as yours saves your life, makes you whole
again, and gives you hope that you will turn 30, get married, and have a family
of your own, all things that were impossible prior, news that it may be closing
its doors feels almost like a death in the family. I cried when I heard this
news, and I panicked. I panicked because I only trust these two physicians with
all things related to the pancreas.These men have done something for me that every other physician said was
impossible, and they succeeded.

Your center needs to stay, and if anything be expanded. There are
far more pancreatitis patients out there that are being mistreated,
misdiagnosed, and misguided by medical professionals, but not at the UMC. At
the UMC, you are loved, treated respectfully, and given the hope and help that
is needed to make a full recovery. Thank you for your time. Please keep the
center as a valuable part of your hospital for years to come.

“Seek His will in all you do and He will show you which path to take.”

-Proverbs 3:6

Monday marked a year and 7 months. Hard to believe that in just a few short months I will be celebrating my SECOND transplant anniversary (transplantiversary). I usually only write the blog now when something happens that sparks a memory into my old life, or when I am feeling like I have something very profound to express. Today I really don’t feel like either of those things. My dad wrote me an email recently asking where The Soup of the Day went...he said he missed my writing. I do too, I remember when it was my favorite hobby, partly because I could not do anything else, but also because I do love to write!

I had the intention of writing this today because of some things I had been hearing about and seeing in the support groups regarding recoveries. Sometimes I feel like I have to touch on things because I never want those who are about to have their TP-AIT to read things and get so scared that they decide not to follow through with surgery. I had typed up a whole rant, but deleted it. This blog has always been a positive one, that I wanted to keep up to offer HOPE to those who may be walking in the same shoes as I was for years. Instead of dwelling on those few negative stories, I want to focus on the positive that has been and still is my life a year and 7 months after TP-AIT.

I can say that minus being diabetic I am exactly where I always dreamed I would be at this time. A few nights ago a pancreas friend posted on my Facebook wall thanking me for posting all of my pictures of fun times. They offered her hope, hope that her life would return to normal soon. I know it will, and I also know that all this was a process, not an instant cure. Glad my partying with friends can be hopeful:-) Life is still great, I am healthy, and things are really back to normal. Now I just need to freeze time and enjoy the moment!

With every day that goes by, I am more thankful for this life. I am thankful for everything that happened, as weird as that sounds. I learned how to just be happy, investing my time only in positive things and positive relationships with others. I see stories every day, with the way things fly around on Facebook, of lives ending too soon, heartache and struggles, and positive feel good things too. It is a big world out there, full of good people. Find them, surround yourself with them, and smile. Everything can change tomorrow, so make today the best it can be!

Friday, June 28, 2013

I think I grabbed this from Jamie's blog, or her facebook. She is fighting PANCAN at 33 and is my source for inspiration on most days!

I last posted on March 28, 2013, which seemed like yesterday! My pancreas followers check in via Facebook and I often get the same reaction: “You haven’t posted in a while, does that mean you are sick.” I remember thinking this when I was pre-transplant, scared out of my mind, and worried that the bloggers I followed died when they stopped posting. Yes, these things go through your mind when you are facing a 14 hour surgery and rough waters. So I decided, months later, it is about that time for an update!

I used to measure life in days, weeks, or months, post transplant. I did that for a very long time, then all the sudden, I forgot about it, I moved on if you will. Not a day goes by that I forget what happened, usually because I am checking my blood sugar (hello, daily reminder) but sometimes because parts of me are still affected by the events that happened and always will be. Certain songs on the radio make me think of all of it when I am driving alone in my car, and sometimes I actually cry. Not sure why, just remembering everything, maybe a little form of post traumatic stress. No illness will ever be the same, not a headache, a stomach ache, a shooting pain, none of it. Every single time, I will have a sickening feeling and go through a variety of different serious and horrible complications that any illness could possibly be. I usually pick up the phone, call the transplant team, discuss it with them, and feel better once they tell me I probably have the flu, or a headache, or a cold. But overall, I am just thankful. I am thankful for every day I get to walk around in no pain at all, every trip I can jet off to with no worry, every night out with my friends, every time I can drink a glass of wine, every time I EAT! I will never take those things for granted, ever. It has now been a year and four months POST TP-AIT!

A year and four months out and I am still happy I did the transplant. I have no regrets, in fact my only regret is that I didn’t know about it sooner. I could not have gone on living the way I was, and I would have most likely ended up with pancreatic cancer, not to mention I would have been in pain for my entire life. I got off all pain medicines, which was harder than anything I have done, and I continue to live life like all this never happened. I won’t say I don’t have struggles. The blood sugar battle will most likely be continuous and lifelong, but it is a battle worth fighting. The “trade-off” if you will, was worth it, and I have to remind myself of this on the rough days. I have adhesions (scar tissue stuff, I guess) which cause some irritation, and I have the start of a hernia at my incision (I worked out a lot early on, probably wouldn’t recommend that, even if they clear you for it). But, those things are just small details on my journey, and they don’t typically disrupt my life. I remember, pre-surgery, when those things worried me so much I almost didn’t go through with everything. Looking back, I am so thankful that my fears didn’t hold me back.

I read stories of people who have had issues even years out of their TP-AIT. I read about bile duct issues, spleen problems, pregnancy issues, hernias, and other random things, and I freak myself out about the future. But I always have to go back to the way life was before surgery, and I have to remind myself that anything that happens from here on out is worth it because of the life I live now. I have NO pain (unless hernia/adhesion, but rare), I have a life, I can eat, I can travel, I do NOT go to the hospital every week anymore (in fact, my last admission date was Feb. 16, 2012, TP day). These are the things I like to remind people thinking about the TP-AIT. Life is short, so make it sweet, do the surgery, and then get better and go on vacation:-) It takes time, I am finally feeling 100 percent, and even I have my days. But no day makes any of the things I went through a mistake! I promise you that!

Thursday, March 28, 2013

“The pain that you’ve been feeling, can’t compare to the joy that’s coming.”

-Romans 8:18

I felt this to be appropriate given that Good Friday is tomorrow and Easter is on Sunday.

I jokingly tell people that my brain went with my pancreas, but in a way it is true. I used to be the kind of person to worry all night long about not dotting an “i” or crossing a “t”. I would get up and look over work items, make to do lists at 3 am when I couldn’t sleep, and I never forgot to turn in anything on it’s due date. I was talking with Brenda, whose 33 year old husband and father of their two babies had the TP-AIT today. Through all of our texting and late night encouragement, I was reminded of something that I shared with her. Last night was probably the scariest night of their lives to date (and I hope always). It was the anticipation of something huge with an unknown outcome. I told her that in one year they would be sitting on a beach somewhere together, blessed beyond measure, not because of her husbands new life (that will be great too), but because of a whole new approach to life that some people will never understand. I really mean that.

This whole experience was my purpose in life and my reason for being here. In the end, nothing matters, no debate, no break up, no fight, none of it, if you are worried that you might die. Not that I am careless now, but I would say I am much more relaxed and honestly a little more selfish. That may sound horrible, but life is too short to deal with the petty stuff that clouds us so much of the time. I want to have as much fun here on this earth, because you never know when you may not be able to anymore. Everything can change instantly, so spend as much time with the people you love. In a way, I am so thankful that I went through 3 years of illness, and the transplant. I am a better person than I was before, and I know so many can relate to that, even if the experience that changed them was something different than my own.

I get emails often that remind me of my purpose here, and tonight was no different. A lady wrote me saying that while she was in ICU her husband would read my blog to her and she had hope. I find this amazing, and it makes eyes brim with tears! I have had so many positive and flat out nice comments like that, and for that reason I know I can’t quit my blogging. I started this blog for others, and also as a sort of therapeutic approach to a situation that was too much for me to handle alone. I had days that I felt so sick that I wanted to die, and other days where I would endure any amount of pain as long as I could see my mom every day (not kidding on that, the fear of what we would both do without me here made me sick). Our outcome was amazing, I am here and thriving. Others do not get so lucky, and the transplant doesn’t always become the end of their battle.

I won’t say my battle ended with the transplant, I have every day life changers, but you can handle them with a smile or with anger. I chose the smile, because it is much more fun and I am into fun these days. I have diabetes, I check my sugar 10 times a day, inject insulin with every carb I eat, and do have a constant fear that I won’t wake up from sleep at night. But, every night I know my angels are watching me, and here I am. I also lost a dear this month, and she is now my angel as well. Our surgeries were 1 week apart and we were forever bonded from the experience. We spent hours online chatting, texting and talking on the phone and I really miss my friend Betsy. She would want me to post this tonight: Betsy did not die from her transplant. She passed from her port that got a blood clot, and it was unexpected and she passed quickly with her husband by her side in bed. She is looking over all of us now, I know that and I know she gives me permission to tell her story. She would not want you to be afraid if you are thinking of having the surgery. She was thankful for it, she loved Dr. Rilo and Dr. Grussner, and the entire UMC staff as much as I did. So please don’t let this steer you away.

On that note, I will admit I went crazy the day I found out Betsy passed. I was at Safeway, buying some groceries and a bottle of wine, and I was facebooking in the check out stand. Her mom posted something about living in a world without Betsy and I was hysterical in the line. The checker asked me if I was okay and I told him I just needed to go home. I then panicked. I called my mom telling her I did not want to die, I left a pretty insane message at UMC telling them I wanted an EDG, EKG, MRCP, and any other test they could think of to make sure I was okay. Once I was calm, I could logically digest what had happened to my dear friend. I now know they were unrelated, but still heartbreaking and a true tragedy. Betsy was supposed to be celebrating her one year anniversary of getting her life back. RIP Betsy, we miss you!

I have some left side pain, which began a year out, and the doctors say it is a “muscle wall weakness and an adhesion” that could be causing it. I felt like I was going backward, the thought of another surgery to fix a hernia (even though it was much smaller than anything before) made me upset, but again in time I came around. I know that of all the issues to have, this one is fine, and I am still blessed. I have had some pain with it, but nothing compared to life before the TP-AIT. In my eyes, my life is perfect right now. I would love to freeze it, keep all my loved ones close, and just be, but that is not the way God made this world. He made it so we can live, lose, and love, and I still can’t explain why the “lose” part happens but it does. People always say “God only gives you what you can handle” and truthfully I don’t like that saying. It does not make people feel better. A friend helped me to see that “we can only handle things with God” and I believe that to be much more my style:-) In closing, if you are debating the TP-AIT, or struggling with weekly hospital stays and a great deal of pain, please reach out and email me. I want to help you. I can get you to the right hospitals close to where you live, or my favorite place (UMC-of course) and I can help you. I went through 3 years of searching for my cure, and I know now how to find it! Remember, the joy is coming, even if you still have things that will never be joyful. Other things will come into your life that will bring you joy, it is His promise to us, and it is something I have lived in my own life.

Sunday, January 6, 2013

Tonight I’m posting for Jared and Jana and Clint, my new friends, who reminded me this past week that people do still look for my blog online, or come across it accidentally and it does help people! Please reach out, I love getting emails, calls and Facebooks from CP'ers. I love bringing hope to people and I love to talk so let me share my story:-)

2012’s PERFECTION:

You often hear people say that the transplant is a “trade-off” and they talk about how it is not “perfect” or a “cure.” I hated hearing that more than anything in the world before I had surgery. I just wanted to be who I was before all this began, and to be cured. So if you are reading this and gearing up for surgery yourself let me be the first to tell you that this was PERFECT. It was a cure, not a trade off, and it has given me my life back.

Perfection to me means living your life the way you want to live it regardless of any limitations. It’s learning to live around those limitations and to not let them interfere with your life. I would say I have done this over the course of a year. It took me until about 4 or 5 months ago to really start living again, but I tried right from the start. This year was not perfect, my surgery was not flawless, and my post surgery life is far from interference free, but then again who has a perfect, interference free, and flawless life? NO ONE!

A New Year in the No Panc Zone:

I have gone on a million trips (in the US, no where THAT exciting yet), gone out with my friends pretty much every single weekend for about 5 months (have to make up for the lost time), hiked mountains, got back into working out, learned about the joy of life, and have never been more blessed and thankful than I have been this year. Every day feels like a vacation and happiness is plentiful in my world today. I want to freeze the hands of time and just enjoy these blessings. Because life is crazy and we are all one moment from something happening, good or bad.

What Problems:

When I would read blogs and hear someone say they had “problems” my mind would race and I would want to know WHAT PROBLEMS they had after surgery and into the next year of life. This year was not easy by any means. I went from taking a huge amount of narcotics to taking no medications at all except for Insulin and Creon (pancreatic enzyme). That is huge and was a problem to get off of, but it can be done. My other problem is type 1 diabetes. People say silly things like “Oh the transplant didn’t work” or “I am sorry” but the transplant worked and no one needs to be sorry! It just didn’t work out to where I avoided diabetes, but it worked! It gave me my life back, took away the pain, and fixed me. The last problem would be that I get nauseous from eating sometimes and I do think it is because the enzymes work well, but not just like the human pancreas. It really isn’t a problem either. All my friends know I always have Zofran in my bag, and I do still take one at least 5 times a week. I don’t consider it a problem, more like a change. The enzymes work and things are pretty “normal” in that area other than you have to remember to take 4 pills every time you eat. But trust me, I forgot one time and never will again.

D-Life in 2012 and the Future:

Diabetes usually doesn’t rule my life, but I won’t say I don’t have days with extreme highs and extreme lows with my blood sugar (as do most T1 diabetics). After a year I have just learned to live with it so much better than in the beginning. For example, this morning I was laying in bed actually typing away in a support group about how diabetes should not be a reason to avoid the transplant when all the sudden I sat up and knew right away I was in trouble. I struggled to get up, get juice from the fridge and drink it. I did all this without even testing my sugar because I knew I was minutes away from falling over. I unlocked my front door, picked up my phone, called my best friend and said “I’m LOW” and sat on the floor with juice. She talked me through it and said she would come over if I stopped talking. We laughed, I tested (49 horribleness), and I recovered from my low. I know the drill now, I know my body, I know to unlock the door, I know to make a call to anyone who will listen, things like that. Overall those moments are few and far between, and diabetes has become routine. I test my sugar in the car, sometimes behind the wheel (sorry Mom) with ease. I change my infusion set (needle/cath part of the pump) every 3 days and I monitor my carbs with insulin (I say this, but really half the time I am out to eat and playing the “how many carbs do I think this has” guessing game). Funny thing about diabetes is one day orange juice can send your sugar to 400 and then next it can stay at 120. You can eat the same exact foods, with the same exact insulin dosage each day, and your sugar can sky rocket one day and remain the same the next. Instead of flipping out at my lack of being able to control my sugar, I just roll with it now. I test, test again, correct, and try, but it will never be perfect and I am okay with that!

As far as the future, no one knows. Not even my doctors. We don’t know how many islets are still alive in my liver, we don’t know how long they will live, we don’t even know if they are happy in their new home. My diabetes doctor said he would imagine I will never get off insulin. He also said that when I have babies I will probably lose all islet cell function and followed it up quickly with “who cares, have babies anyway and I will help you.” I won the lotto when I found this doctor too (after walking out on a doctor in Scottsdale mid appointment and forcing my mom to walk out too). I wish I could find someone who was 10 years out of their transplant, but I have yet to be able to locate anyone who is more than 4 years out. I remember thinking, “Maybe it is because they are all dead” and my parents even thought this too. The real reason is probably because there are very few people in the country who have had my surgery, and even fewer 10 years ago. I promise to be the girl who still blogs 10 years out from surgery, so others can see you don’t die, you thrive! I have only found ONE friend on the web that has had a baby after surgery. She got pregnant exactly a year after, and she had a normal, healthy pregnancy. She did end up losing all her islet cell function after, but her little “monster” (her words, not mine) has made it all worth it. This is one question that comes up when I talk to moms of little girls a lot. I get it and it is something you worry about. But as far as I know, you can live a perfectly normal life with no pancreas. I promise to let you know if anything comes up, but so far so good. My Medical Team:
I only have doctors that I love. WOW. Never thought I would say that. Arriving at this point was probably harder than any of the sickness part, I am not kidding. The feeling of an jerk in an emergency room (ER docs usually, sorry but they think they are God and I have had few to prove this theory wrong) telling you about your body and acting like they know all about a pancreas, when in actuality they know very little about your condition, has to be one of the most frustrating things ever. But, finally, after beginning this whole journey 4 years ago, I can say I have surrounded myself with doctors I love. My advice to you, if you have CP or even pancreatic cancer, is never settle on one doctor, even if they are telling you what you want to hear. Continue researching, searching, and fighting for yourself or you will never get better. I know this. I settled several times because doctors said they would do something to fix me, and then it wouldn't work or I would think I was at the "best" facilities in the country, when really all that matters is finding the best doctor. They are NOT all created equal. One hospital can completely misdiagnose you, while another can save your life. Research in the form of referrals. If you know someone who has survived by going to a doctor, make yourself an appointment with that same person! And always get second opinions. I am shouting this! I am bossy tonight.

I will leave you with the picture that spoke to me on Facebook the other day:

"From every wound there is a scar, and every scar tells a story. A story that says, "I SURVIVED."

Updated scar pics to come for my one year transplant-aversary, get excited!